Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Stupid Relatives

Lockheed

By Lockheed
in Coping with Celiac Disease

Recommended Posts

Lockheed Apprentice
Lockheed
Posted

Okay.. so I mentioned recently to a family member that we were considering moving to Boston. Not anytime soon, but in the future. I fell in love with Boston because it was the first place where I could ask for a gluten free menu or gluten free menu items and the waiters knew exactly what I was talking about and didn't just stare at me blankly like I'm an alien speaking a foreign language or something (which I realize if you've never dealt with the topic before that's the proper response). But Boston seems to be fairly celiac aware and savy. But recently I've been having other issues and I tend to not talk to people when I have issues because.. well I'm having issues! Like duh hello let me go deal with myself and when I'm normal again I'll come talk. So this is the e-mail I got:

"When you have spoken about your health issues and Boston being a place with the highest concentration of people with Celiac's- I have to assume that also means there are Dr.'s there who have a greater insight into the healthcare needs and have a greater instance of finding solutions that work for Celiac's. With that being said- this makes me jump to the next conclusion that you are having problems that you are SPECIFICALLY going to Boston to seek treatment for."

This makes me cringe so much. We all know there is no cure or solutions that work for celiac's except a gluten free life. I don't even want to call it a lifestyle because that makes it sound like on Saturday we can just throw our lifestyle out the window and adop a different one for the day as long as we're good with our lifestyle again on Monday. It's not a choice, it's a way of life and really I don't mind it. And why do I have to be seriously sick in order to want to move away from my crazy nutzo family (no - really... they are nutz)? And if I were going for medical treatment would I seriously be staying there for a week? I just don't even know what to say anymore.

And just for the record I didn't say that Boston had the highest celiac population.. honestly I have no idea who does, but I did say they are aware of it because there is certainly a bigger diagnosed population there than out here in the middle of no-where Texas.

Sorry.. I just needed to vent about it somewhere with people that understood. It's a diet restriction not a death sentence.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sickchick Community Regular
sickchick
Posted

I am so glad you posted that! B)

I am the same way- when I feel like crap I keep it to myself and I don't whine to anyone... ESPECIALLY family.

Sorry you have to deal with that... :rolleyes:

Be well! :)

gfpaperdoll Rookie
gfpaperdoll
Posted

as a Texan let me just say, that if you are in nowhere Texas & they do not think you are an alien from outer space because you are not eating peach cobbler, chicken fried steak & biscuits & gravy, you are doing good. :P

Most people in Texas are all about food & plenty of it. If your uncle's cousin's best friend dies they will bring food! People from other states might think this is an exaggeration but it is not. ;)

I have only been gluten-free for 4 years, but one thing that I have recently learned is that the less it is mentioned to family, friends, & acquaintances the better off I am. Now if I could just get where I do not stop people on the street to tell them about it!! B)

Just never mention it to your family again. Instead just talk about how you are going skiing, surfing, mountain climbing, taking up a new hobby etc etc, but never mention the food...

frec Contributor
frec
Posted

You catch on a lot faster than I do! I've had this for 6 years and I just now came to the conclusion I should never mention it to my brother and sister. I've always tried not to mention it much (my brother tends to suddenly have to hang up if I mention health on the phone), but I think I need to lead an entire secret life they don't know about it. My brother recently told me not to bother him with my health issues. I really thought I'd been pretty good about avoiding the subject. My sister is more tolerant but still says things like, "Do you HAVE to tell the waiter you have allergies?" Then she says things like, "I didn't know pasta had wheat in it!" But then she saw me wearing lidocaine patches (fibromyalgia related) during out last vacation together and later said, "Why didn't you tell me you were hurting that much?"

So I don't get it. I think you are right--don't talk about it. They can ask if they want to know. It is tough, though, because food is a very pervasive topic. At least my friends are great.

Boston is a beautiful area--I've been there a lot.

Salem Rookie
Salem
Posted

Before I finally went gluten-free, I was gluten-light except when I went out to eat. It seemed that every time I went to a family member's house I would get sick (and grumpy). I felt like I was "Debbie-downer" so I would try to hide how sick I was. A friend of mine was so kind as to suggest that perhaps it was all in my mind. From then on, I started to think that maybe my family thought the same thing. I started a blog about my gluten-free journey, I think it has helped them understand that although being wheat-free might have been a choice before, it is no longer a choice. They are kind of understanding but are still clueless.

I try to remember that they are uninformed about the disease and aren't trying to drive me insane. When I get a phone call about a great new Gluten filled meal, I just listen and say "hmmm... sounds good." When what I really want to say is "why are you telling me this?" I think it's like telling a drug addict about a great new drug that they gotta try. Families want to share with us, and want us to get better and be "normal" again. They don't understand that being Gluten-free makes us feel normal and life is so much better.

cindy lou Newbie
cindy lou
Posted
Okay.. so I mentioned recently to a family member that we were considering moving to Boston. Not anytime soon, but in the future. I fell in love with Boston because it was the first place where I could ask for a gluten free menu or gluten free menu items and the waiters knew exactly what I was talking about and didn't just stare at me blankly like I'm an alien speaking a foreign language or something (which I realize if you've never dealt with the topic before that's the proper response). But Boston seems to be fairly celiac aware and savy. But recently I've been having other issues and I tend to not talk to people when I have issues because.. well I'm having issues! Like duh hello let me go deal with myself and when I'm normal again I'll come talk. So this is the e-mail I got:

"When you have spoken about your health issues and Boston being a place with the highest concentration of people with Celiac's- I have to assume that also means there are Dr.'s there who have a greater insight into the healthcare needs and have a greater instance of finding solutions that work for Celiac's. With that being said- this makes me jump to the next conclusion that you are having problems that you are SPECIFICALLY going to Boston to seek treatment for."

This makes me cringe so much. We all know there is no cure or solutions that work for celiac's except a gluten free life. I don't even want to call it a lifestyle because that makes it sound like on Saturday we can just throw our lifestyle out the window and adop a different one for the day as long as we're good with our lifestyle again on Monday. It's not a choice, it's a way of life and really I don't mind it. And why do I have to be seriously sick in order to want to move away from my crazy nutzo family (no - really... they are nutz)? And if I were going for medical treatment would I seriously be staying there for a week? I just don't even know what to say anymore.

And just for the record I didn't say that Boston had the highest celiac population.. honestly I have no idea who does, but I did say they are aware of it because there is certainly a bigger diagnosed population there than out here in the middle of no-where Texas.

Sorry.. I just needed to vent about it somewhere with people that understood. It's a diet restriction not a death sentence.

You just made my day, I feel your pain. My family doesn't *believe* in Celiac and certainly not that I'm sick. They think if the "real" doctor can't "fix" it with a pill or surgery, then it's not real. (They are very sick people- multiple heart attacks, hysterectomy, diabetes, etc ......)

Your last sentence really made me chuckle, thanks! Oh, I live in eastern NC and all the Outbacks, Macaroni Grills (scary thought), and a few other places have gluten-free menus. I did a review of Outback on my blog- their gluten-free meal was great, all the way down to the brownie. The brownie, sadly, was not dairy free however, so I did get "dairy-ied" if such a term exists :)

susanm Apprentice
susanm
Posted

Hi, I'm from the Boston area, so I had to respond. While there might be more awareness in this area, you got lucky with your restaurant. A lot of people are still very ignorant about it here.

Part of the reason I think there's more awareness here (now hear me out first) is not that there are more doctors here. Nooo, doctors aren't all that aware. It's because there is more of an alternative lifestyle here. There are a lot of chiropractors and alternative medicine practitioners. The reason I said "here me out" was not to say that celiac is an alternative lifestyle. It's just that these alternative medical practitioners are just more aware of dietary subtleties than regular medical doctors.

I go to a regular doctor that also is an alternative medical doctor too. In other words, she works both ends. First thing she had me do was an elimination diet to see what I was sensitive to. Unfortunately, there was no follow-up when I said that reintroducing the wheat bothered me, so now I have to follow-up myself.

Just giving you a little background information on Boston before you move out here because you think we're a haven of great medical information. <_<

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748
    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.